I was diagnosed with Menieres in 2008. The first seven years were not that bad...the last two have life changing. Like everyone else here, I've tried it all. Unfortunately my shunt surgery last October was not successful. I have 80-90 percent hearing loss in my right ear. A few months after the surgery my vestibular nerve got attacked...It has been a major issue ever since. There is no doubt in my mind that my Menieres is a result of a virus. I am currently enrolled in a clinical trial. I am starting John from Ohio full force next week. Has anyone had their vestibular issues recovered after John from Ohio. I am so fearful that it is permanent. I know my hearing is gone...but losing my balance is so much worse. I have two little girls in diapers...I am 38 years old...Some one please give me some hope that this antiviral approach can help my balance recover. Thank you all for your support. God bless.
I took acyclovir and then famvir and the degradation of my balance stopped. I had not had vertigo but i had had some symptoms such as getting nauseated by certain music and sounds (tulios), an unsteady feeling, on one occasion having the world tilt to the right for several hours. During this time I had much greater hearing issues. They were all arrested by antiviral meds. I never tried John of Ohio. I would go straight to antiviral meds if i were you. Explain to your doctor, you experience, that you want to leave no stone unturned as this is seriously impacting your ability to take care of your children and you know of many anecdotal reports of success with antivirals. Let him know you know it is not guaranteed it will work for you but that since the risk with these drugs is small compared to other treatments you want to try it. In my case, i will add, i have only one balance nerve so if i had lost that, i would have been in a bad way so my symptoms though still in the early stages were alarming. Good luck.
I am at my 1 year anniversary for JOH. After 2 weeks of the full regemin, my dizziness and nausea (from dizziness) were gone. I still have loud tinnitus, and some pressure which cycles from low to high. I tried AV's and only to find myself worsen with Hyperacusis. When I finished my 3 months on AV's the Hyperacusis faded away and I am back to where I was a year ago. So I guess I am an example of one who has been helped by JOH alone. I had to cut back on the Lysine to 2000mg per day due to GI issues. Other than that, I'm hanging in there. I have not been disabled or spent a single night puking since I started JOH.
Thank you both so much for your time in writing that. I will indeed get on full dose antivirals along with John's regimen. So cool to get advice from you both. Thank you.
There is hope! I have been on JOH + AVs for about a year. There have been some rough patches but I'm functioning again and practically normal. Hang in there! Blake
AVs have solved my Menieres. Btw, you need to tell the folks at the clinical trial what you're doing, otherwise any improvement you experience might incorrectly be attributed to that. It's a huge confounding variable for them.
Scott That is why I am waiting until next week to start the regimen. Clinical trial ends then. I guess my biggest concern is according to the docs I am in the "burnout" phase. Just hoping it's not too late. Thanks again everyone. Have a great day.
Even if you are in burnout stage of one ear, what about the other? It is a lot easier to rehab balance when the situation is stable, ie even with one nerve completely gone than with a moving target such as a nerve that is changing every day.
June, You are spot on... that is a great description. My vestibular nerve right now is a moving target. I did VR for 5 months and ever y time I walked in I was at a different starting point. I just hope once I get this anti virals going it stops it. If not... hope it stays in one ear and burns out. I hate taking Valium but it's the only thing that works. Thanks June!!
Antivirals and JOH have made a huge difference for me. I have to keep this post short, but just want to say, yes there is hope!!
Does anyone know if JOHN of Ohio tends to work better on MM diagnosis of less than 3 or 5 years? Does it have the same success rates on old timers like me (2008) ? Thanks!
I started JOH nine years after my first menieres episode and it helped significantly. I am now 12 years after that and I had fallen off the regimen and was not doing well. I am now back on it along with A/V's and have 120 days dizzy free. One comment on the "burnout" stage. My doctor told me that I was probably going through burnout this past spring when I was getting dizzy 3-5 times a week. He said my brain was having difficulty finding center balance and to try vestibular rehab exercises. He also stated that my hearing would in that ear would go or be significantly altered due to burnout. In the summer I began the A/V's and not only have I not been dizzy since 10 July but my hearing has actually improved. That is why I tend to credit the A/V's (and JOH) with my current incredible dizzy-free life and not burnout.
The antiviral approach, which i believe includes JOH, tends to work better sooner, but i have heard stories on this board and from my doctor of people it did help way down the road. Why not give it a try.
I was diagnosed way back and my hearing is fully recovered. I don't believe the AVs care how long you've had it. However, there may be more permanent damage for longer sufferers. I think I'm 100%, but i really don't remember what 100% ever was.
I believe that I am an antiviral success story but I felt hopeless and desperate in January before starting AVs and low sodium diet. The people on this forum gave me hope. (Thanks Scott)
I wish Scott had taken me out to the woodshed and forced anti-virals down my throat. Not that my surgery isn't going to work, just saying.
It's not too late. Honestly, i would do it even if your surgery DOES work. If you have a viral-related cause, then there's no stopping it from going bilateral without AVs. There is at least one previous member here who had a laby and currently takes AVs. I have a doctor friend who once told me that she diagnoses adult ADHD by giving her patients one tab of Ritalin. If it works, then they have it. If it just speeds them up, then they don't. I kinda feel the same way about AVs.